by Diane Rehm
Dr. Forest understands that having that option is a comfort for Lori. Together the two have spoken with Lori’s family, who are also aware that Lori has that option and can revoke it at any time. Like Lori, many people outlive their first six-month diagnosis, so, said Dr. Forest, “We just extend that time line and stay connected and evaluate for as long as she remains competent and able to take the medication herself.”
DIANE: That must give you some reassurance.
LORI: Well, I know that I’m dying. I’ve known that for four years. And one of the scariest things about that is, you have no control, right? No one can fix it, no one can make it better. All my life I’ve been a control freak. But it doesn’t work with cancer. However, now I can control how I die. If I could choose when to die, it would be when I’m ninety. But that’s not an option. I have very distinct memories of my great-grandmother dying of Alzheimer’s, and by the time I was six, I knew I did not want to die like that. Watching what happened to my great-grandmother terrified me of the possibility of losing my personality and myself. Death has been part of my whole life. My aunt died horribly of breast cancer, and that’s not what I want.
D: Are you in pain?
L: Absolutely, ever since I first felt my lump and self-diagnosed. I woke up in the middle of the night, and I rolled over and had this stabbing pain in my chest, and I thought it was one of my little boy’s toys. So I brushed it away and the pain was still there. I thought, Well, that’s not right. So I ended up having an incisional biopsy, just taking the whole lump out, because it hurt.
I don’t want to die. I’m just forced to deal with dying, even though I prefer to try to spend as much of my time as I can just living. When you first find out you’re terminal, death hangs over you, like it’s this overwhelming darkness. It shuts out the sunlight. But death can’t overshadow you forever, right?
D: Tell me about the first time you met Dr. Forest.
L: I already knew that I wanted to take advantage of the End of Life Option Act. I’ve always thought there should be options for people at the end. So the minute I found out that the legislation was being considered, I told my oncologist: I want you to put in your notes that I want this option, and she’s like, It’s not even passed yet. And I say, I don’t care. I want there to be as long a history in my medical records as possible, so that there’s no way anyone can question my decision or say that someone was pressuring me. If things start going really bad, I don’t want to suffer weeks or months of misery.
Dr. Forest tells me that Lori does not have the necessary drugs now, but the prescription could be ready within forty-eight hours. That’s the number one thing people are concerned about, she says, the amount of lag time when you need the drugs. She says Lori is fierce around pain, but it’s not for her physician to determine the extent of her suffering—that Lori is the one to make the judgment.
I asked Dr. Forest why she had become supportive of medical aid in dying.
DR. FOREST: I trained in San Francisco at the height of the AIDS era. I’ve been a family medicine doctor more than twenty-five years now, and I’ve had many patients ask me for this, for aid in dying. Palliative care, hospice care—there’s a whole group of options. But in my experience, there’s a subgroup of people for whom nothing that we can do helps with their suffering at the end of life—nothing. And medical aid in dying does. There’s been this sort of quiet ability in the medical profession to employ medical treatments that hasten death. We can take people off life support. That hastens death. People can stop eating and drinking, and that hastens death. It’s not medical treatments.
I witnessed my own grandmother’s death. She was a physician, the first female chief of staff of a hospital in the U.S. And she ended up, against her will, on life support. It was a difficult time for my family. She never would have made that choice—she would have chosen aid in dying. So my grandmother, my grandfather, my mother, and I said at that time that we would fight for it to become legal. My grandmother died during my first year of medical school, but we’d already had conversations about what our choices would be at the end of life. And she was very much in support of patient autonomy. Yet she ended up in a situation that she would never have chosen.
D: Why did the doctors make that decision without the family being present?
DR. F: She was brought into the hospital in an emergency situation. If she were here today, she would very much support medical aid in dying, as would my grandfather, also a physician.
The very day I interviewed Lori and Dr. Forest, the California law was challenged and put on hold indefinitely. I asked Dr. Forest what she would do while the hold was in place.
DR. F: As a licensed physician in the state of California I practice within the confines of what’s legal. And if aid in dying becomes illegal again, I’ll be back in the same situation: I will not write prescriptions.
D: But you said earlier than many deaths do take place “under the table” when suffering is present?
DR. F: Yes. But very quietly and clandestinely. For instance, in hospice I was trained to go ahead and turn up the medication for my AIDS patients to ease suffering, knowing that it would hasten death. I think the statistic is that more or less one-third of practicing physicians would say that they’ve seen or done that themselves.
D: I hope—for Lori’s sake, for my own sake, and for everyone’s sake—that the law is not overturned. I worry about that very vocal minority who would like to see it overturned. Dr. Forest, do you think that’s a possibility?
DR. F: I think you’re right to be worried, because the tactics that are used in opposition to privacy and patient autonomy are formidable elements of our society. Given the last year and a half in California and twenty years in Oregon, and that this is very compassionate medical care for the people for whom it’s appropriate, it would be a tragedy to go back to when they did not have control over their own suffering at the very end of their lives.
D: Lori, would you use the medication if you had it?
L: I don’t know. I don’t know how things are going to look when I’m dying. I would love to fall asleep and then die in my sleep, but if it gets to the point where I have no quality of life and cannot have my pain treated, I’m going to want to do something about that. I’m incredibly stubborn, and I don’t take no for an answer very well. I would find a way to make it happen. You know, before this law in California passed, I used to think, Well, what part of Highway 1 has a cliff that you can just drive off, because I don’t want a prolonged death. Not only for me, but also for my children. I have a twelve-year-old and he does not need to see his mother in misery, screaming and crying and not myself, in a situation where all he’s going to get is trauma and misery. That’s not okay.
D: How does your husband feel about your decision?
L: He supports me 100 percent.
When Lori underwent breast-removal surgery, she was told she had no lymph node involvement and only about a 10 percent chance of recurrence. She then discovered she had the BRCA2 gene, and decided to do a prophylactic bilateral mastectomy. At that point she was very hopeful about living to a ripe old age. But fourteen months later she discovered that her cancer was metastatic.
L: My biggest concern when I found out that I was metastatic was that there’s no way to control my pain, because I can’t take opiates—they make me crazy. And I don’t want to be that person.
D: Dr. Forest, what, as a physician, would you say to the patient or family when there is nothing more that can be done? Do you actually tell a patient: You are terminal?
DR. F: The short answer is yes. Having these kinds of conversations about prognosis is crucial. I don’t know how long someone is going to live, but statistics are helpful in that they help someone plan for kind of the worst-case scenario. I ask questions about what a patient wants to do, what kinds of goals she might have, would tre
atment keep you from being with your kids. Developing a prognosis is not an exact science, but giving people a sense of how much time they have is liberating. They can live the life that they have.
D: Describe the prescription terminally ill people receive, if they have met all the criteria for medical aid in dying.
DR. F: The prescription itself, of a controlled substance, is a compounded mixture of drugs we can easily get. Once I write that prescription, it’s out of my hands in terms of what someone does with it. It’s a faith, it’s a trust, it’s a culture of honesty that the patient will respect and protect the medication and use it as directed. The prescription is valid for one month. The medication is not in capsule or tablet form. It’s in a compounded liquid and has been described as tasting absolutely vile.
I wondered whether this is because the medical profession wants to make sure you really want to take it and are willing to ingest this god-awful-tasting stuff.
Dr. Forest responded that she didn’t believe the taste was calculated to be disagreeable, and added that small user groups are sharing information about how to remove that acidic, biting, bitter taste.
I asked Lori how she felt, knowing about the awful taste of the end-of-life medication.
L: I have endured more than most humans can imagine, so in my world, I don’t even care. Death is going to be a hard pill to swallow in that I don’t want to die anyway.
D: Dr. Forest, could you describe end-of-life suffering?
DR. F: You can’t be in practice for decades as a family physician and not be present both at the beginning and at the end of life. Most people have a vision that they’ll just comfortably slip away. Before 1950, most people died suddenly. The age people lived to was around sixty or seventy, and people would die of a stroke or heart attack or an accident or infection. What’s happened now, in my experience, is that people die slowly. They die of cancer, heart disease, strokes, and infections, but after extended periods of time. As a consequence the suffering is different for different people. Sometimes they have pain we just cannot palliate. Or they have the best care in the world and they still experience physical pain. It might be psychological pain or spiritual pain, very difficult to treat medically. For some, the loss of dignity and autonomy is more than they can bear. So it’s a different kind of suffering. To bear witness to that is excruciating for the family, and certainly for the person experiencing it. I’ve seen people unable to catch their breath. Not being able to address that suffering, whatever it is, is just heartbreaking for a physician.
I believe the best thing we can do is to support people who are willing to embrace an expansion of medical practice to include this kind of treatment of suffering. Tell the stories of suffering that don’t fit into the medical model, tell stories of how the option itself gives you a sense of relief, like you could do something, you could have autonomy at the end of your life. Telling those stories is crucial.
Letting legislators know you are in support of aid in dying is not minor. These laws get passed because legislators know their constituents want them. If we as physicians don’t speak out, then legislators don’t know they can actually push back against the very vocal minority. It’s not until you’re faced with death yourself, either as a patient or as someone personally involved with one that you become aware of the limitations or barriers.
We are working on a national curriculum for medical schools. One out of five Americans now lives in a state where medical aid in dying is legal. People need to know about it, whether they’re going to deploy it or not. The training doesn’t exist in very many places yet, but I think it’s being raised as an issue.
Lori Wallace-Pushinaitis died on October 20, 2018. At the end she decided to have hospice in the last days and passed away just as she had hoped to—surrounded by loved ones—without the use of medical aid in dying.
Christina Puchalski
BOARD-CERTIFIED PALLIATIVE-CARE PHYSICIAN, GERIATRICIAN, AND INTERNIST, GEORGE WASHINGTON UNIVERSITY SCHOOL OF MEDICINE
Dr. Christina Puchalski is the daughter of Polish immigrants, the first member of the family born in the United States. Her parents witnessed the devastation of World War II in Poland. Her mother escaped to England with her son and her first husband, who was later killed. Dr. Puchalski’s father was in the underground army, part of the Resistance, instrumental in helping Jewish people get out safely. Her parents met in England after her mother became widowed. Her parents and her brother moved to California, where Dr. Puchalski was born and raised. She has beautiful red hair, very fair skin, and a wonderful smile. She says her parents instilled in her important values about honoring people and respecting everybody, regardless of age or illness or color or race.
DIANE: Dr. Puchalski, tell me about the work you do now.
DR. PUCHALSKI: When I became a physician, I was struck by the lack of attention to spiritual issues, broadly defined. Not just religious, but spiritual issues, meaning purpose, what people value most in clinical care. I started a course at George Washington University on spirituality and health. Since then, I’ve worked on research, on developing guidelines for how to address spiritual issues with patients, particularly in palliative care.
D: You were raised Roman Catholic?
DR. P: Yes. I was raised that way, but my parents also valued the importance of beliefs in general. My dad, in particular, was very interested in different spiritual practices. We explored lots of different faiths, and that interest has continued throughout my life.
D: Your father is now ninety-eight years old?
DR. P: Yes. It’s absolutely amazing. He’s in a wheelchair—he’s had a lot of health issues in the last five years, and I believe he is nearing the end of his life. I can see changes in him now: he’s a little more contemplative and quieter. At the same time, he has amazing capacity to enjoy. Even last night, as I sat with him on the edge of the bed and he started coughing, the doctor in me was thinking, Is this going to progress to pneumonia and should I call hospice now? He, on the other hand, was fully enjoying the moment. His health aide was on the other side of the bed, and they were sort of teasing and laughing and expressing tremendous joy. I am so blessed that I have him in my life at this point. He and my mother always taught me the importance of appreciating every moment in life, the importance of being present.
A few years ago, he fell and broke his hip. Here’s a man who was in World War II, he was in a prisoner-of-war camp, he was active all his life. And I thought, Is this going to be it? Is he going to be so frustrated in that wheelchair that he won’t be able to go on? No, not at all. I thought, Perhaps now is the time to refer him to hospice because I want to make sure I can manage things with him. I’ve taken a palliative-care approach with him for a number of years, but I want that additional level of support. If his symptoms get to the point at which he needs medication, I want to be able to handle his shortness of breath or pain while at the same time honoring his lifestyle. He’s not used to a lot of medications.
D: Can you explain the difference between palliative care and hospice?
DR. P: Palliative care is a field of health-care medicine, an interdisciplinary field whose focus is on the care of the seriously and chronically ill. Then, as we get closer to a patient’s death, palliative care can continue, but hospice is more of a designation recognizing that people may be in their last six months of life. I’m also a hospice medical codirector. I don’t personally see a sharp demarcation between palliative care and hospice. What Medicare considers to be the criterion for hospice is a prognosis of six months or fewer. Medicare will also cover palliative care. It’s a difference in time frame, but I think the approach is very similar.
D: Is medication offered during hospice and palliative care?
DR. P: In terms of managing physical symptoms and other symptoms, yes, absolutely.
D: I understand you’ve served in an advisory rol
e with the Vatican. Tell me about that.
DR. P: The Vatican and the Pope, in particular, whom I love. Pope Francis is very supportive of palliative care and hospice. He delegated an advisory board to the Pontifical Academy for Life to explore palliative-care options globally. I had the tremendous honor and privilege to serve on the board for that initiative. We then had an international conference to discuss how the Church can support the development of palliative care worldwide. There’s no question that the Vatican 100 percent supports palliative care. There’s a tremendous need for all countries to develop it. People worldwide are suffering from all sorts of symptoms, including spiritual distress. Part of my role on the advisory committee was to talk about my work in interprofessional care and spiritual care, where we address spiritual distress. We work with specialists who are board-certified chaplains, health-care chaplains. In countries that don’t have chaplains, there are other people who can fill the role of spiritual caregiver.
D: Given that background and the role you play there, I’d like to know how you feel about medical aid in dying.
DR. P: I’m concerned that in this society and in other countries where it’s legal and where euthanasia is legal, I wonder what that says about our respect for life, for quality of life, for caring for people. When my patients request it, I ask them why, and what their concerns are. The concerns are, first, pain management and symptom management. Palliative care and hospice care can manage those. The next concern might be dignity, or lack thereof. “I don’t want to be lying in bed, having people change my diapers.” That’s very real. I can tell you, however, that the people I’ve cared for, if that is done with respect for the individual—I think of how my dad’s nurses change his diapers—it’s an act of love and respect. I ask myself whether in the places where physician aid in dying is legal here in the States, in cultures and countries where euthanasia is legal, are we adversely affecting social norms? Are we giving a message that when you get to that point, there’s not a lot of opportunity for meaning and purpose and joy?